The 2015 PCORI Annual Meeting: Progress in Building a Patient-Centered Comparative Clinical Effectiveness Research Community Nueva Vida Intervention Kristi D. Graves Georgetown University Maria Gloria Elliott Nueva Vida, Inc. October 6-8, 2015
Kristi Graves and Maria Gloria Elliott Have nothing to disclose. Organization Logo Here (150 dpi Resolution jpeg or png file)
Nueva Vida Intervention • Randomized Controlled Trial of a psychosocial intervention to improve quality of life outcomes • Latina Breast Cancer Survivors and Caregivers (partner, family, friend) • Randomization to Nueva Vida Intervention or Usual Care Progress to Date • 93 Survivor / Caregiver dyads enrolled (Target: 125) • 29 dyads completed Post-Intervention • Round 2 in progress; Round 3 Late Fall 2015 Rush et al. (2014), Quality of Life Research
Real-World Intervention Development • 8 “ talleres ” (workshops) Impact of Cancer on Family (Introduction) – 2 per month Stress Management* – 5 core topics Improving Communication* – 3 topics: “ Research Spirituality and Cancer* Democracy ” Balancing Physical and Emotional Needs* • Survivors and caregivers Anger Management meet in separate rooms Intimacy after Cancer • All gather together at end Trauma and Cancer to discuss Role Changes • Groups share a meal at Understanding Distress beginning or end of the Myths and Cancer session Including Others in Helping Caregivers Putting Our Lives in Order 4
Patients and Caregivers [The workshops] give you a new vision and they help you understand the problem so you can face it with a more positive perspective. - Caregiver Yes, [I would recommend this program to others] because you benefit emotionally. Coming together with people who are going through the same thing lifts you and gives you motivation. - Caregiver There was a little of everything and even more, because they touch upon deep topics to help us change and accept our condition - Survivor Of course [I would recommend this program to others], because it helps strengthen relationships with family members and friends. - Survivor
Proposal & Implementation • Patient and Community partners involved: – PCORI Rubric • Formulating research questions & study design • Participating in and monitoring conduct of project • Helping to plan dissemination of results • Reciprocal relationships, co-learning, trust, transparency • Engagement: roles, contributions – Patients, Caregivers, Clinicians, Researchers – Seeking input at different stages of the project
Engagement and Dissemination • Engagement Strategies: – Twice monthly site check-ins – Monthly phone meetings with entire team – Annual in person team meetings – “ Think aloud ” technique – Polls / Surveys • Dissemination to participants and others: – Community Meetings – Newsletters – Webinars – Post-Intervention Parties 7
Lessons Learned & Taught: Patient • Feel privileged to test our intervention on a broad scale • Appreciate time and attention needed for research • Observe how research is an essential tool to bring evidence- based practice to improve quality of care • Recognize importance of connections with all team members
Lessons Learned & Taught: Patient • Learn how to bring topics, ideas to the team • Listen to not only the words, but the context to understand a person’s story. – Be willing to listen, even if something seems ‘ minute. ’ – Create a community so that all perspectives are elicited and respected. – Share a common language as a first step. – Build bridges to embrace cultural and “ acculturation ” differences as the next next steps. • Maintain and support flexibility for implementation, adaptations may improve the process.
Lessons Learned & Taught: Patient • Interventionists set the tone: – Inclusiveness of all belief systems – Acceptance (e.g., an open mind!) • Data gleaned from research is useful – but equally important is that quality care is provided in an open, respectful, and inclusive manner • Use results to help underserved groups have a bigger voice to better address disparities
Thank you! Kristi Graves: Kristi.Graves@georgetown.edu M. Gloria Elliott: mgromelliott@gmail.com
Thank you! GU : Roxanne Jensen SHARE : Advisory Board Members: Jeanne Mandelblatt Ivis Febus Sampayo (PI) Roberto Londono Vanessa Sheppard Jennie Santiago Robert Warren Stacey Kaltman Olympia Cepado-Coto Regina Hampton George Luta Monique Perret-Gentil Christina Rush Wanda Lucas Juliana Munoz Latinas Contra Cancer: Tania Lobo Ysabel Duron (PI) Angela Chiprez Other Partners: Nueva Vida: Yvette DeLaTorre Lombardi Breast Cancer Claudia Campos (PI) Teresa Ipong Garcia Patient Advocacy Committee Rachel Hanisch Martha Brewer Maria Eugenia del Villar Claudia Colindres Alma Hamar Data Safety Monitoring: Ana Quijada Alfiee Breland-Nobel Consultants: Filipa Lynce Gilda’s Club NYC: Lina Jandorf Georgeen Newland Migdalia Torres (PI) Maria Gloria Elliott Florencia Gonzalez Carolina Hoires Barry Jacobs Awilda Torres Anna Napoles
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